Why researchers and religious leaders in Salt Lake City are concerned about gene editing

SALT LAKE CITY — A scientist, a student and a pastor walk into a meeting room — it sounds like the opening line of a joke, but it’s serious business for the Rev. David Nichols.

He’s one of the principal organizers of a unique gathering of scientists and people of faith taking place this weekend in Salt Lake City to address a promising, but ethically problematic, advance in medicine.

"We’re trying to bring together people from the realms of faith and science in a meaningful dialogue about some of the most cutting-edge research that’s being done," said Nichols, pastor of Mount Tabor Lutheran Church. Participants include leading geneticists and theologians from across the country.

"God and Human Suffering: Conversations on 21st Century Genetics and Our Shared Future" centers on the CRISPR-Cas9 (pronounced "crisper cass nine") gene-editing technique, which has disrupted scientific assumptions about what’s possible in medical treatment and what’s moral in practice, said Dr. John Carey, a professor and pediatrician at the University of Utah who worked with the Rev. Nichols on the conference.

"In 40 years as a physician in genetics, I’m not sure I’ve ever seen an advancement that has so much potential to help alleviate disease," he said.

It’s an exciting technology, but also a dangerous one, with the potential to create further medical inequities between the rich and poor and increase stigma surrounding those affected by genetic disorders. CRISPR-Cas9 forces scientists, ethicists and people of faith alike to consider where to draw the line on gene editing, the Rev. Nichols said.

"Now that we have this ability to alleviate human suffering like never before, how do we decide what to edit out?" he said.

Discoveries and disruption

The CRISPR-Cas9 gene-editing technique replicates a natural process in bacteria, which enables them to fight viruses by editing their own DNA. Scientists use the Cas-9 protein to alter segments of DNA called CRISPR, short for clustered regularly interspaced short palindromic repeats, fixing abnormalities or boosting a cell’s ability to fight infection.

Experts predict the technique could eventually be used to eliminate gene-linked diseases such as Tay-Sachs from otherwise healthy embryos and revolutionize treatment options for people suffering from disorders like muscular dystrophy. Experiments have shown that it can modify plants to create healthier crops and target infections like HIV in animal cells.

In early August, an international team of researchers announced they’d used CRISPR-Cas9 technology to correct a heart defect in dozens of human embryos. Their work may help quiet concerns about accuracy and effectiveness, although the embryos were only studied for a short time and not implanted.

Although this type of gene editing is only 5 years old and relatively untested, it has prompted endless reflection on how far is too far when it comes to medical innovation, said Dr. Jeffrey Botkin, chief of the division of medical ethics and humanities in the department of internal medicine at the University of Utah.

"It’s sparked a lot of debates about the appropriate level of control people ought to have over the genetic makeup of their children," he said.

CRISPR-Cas9 gene editing has also led to conversations about which genetic disorders should be targeted, since some members of the deaf community, for example, oppose eradicating deafness from the population, the Rev. Nichols said.

Deafness "is a gift to some," he said.

Additionally, gene editing may pose unknown risks to future generations because the process can be used to change cells that are passed on to offspring.

"The idea that you’ll change DNA, affecting the basic blueprint for the generation after the person whose DNA has been changed, brings up some (moral) crises," Carey said.

In December 2015, leading geneticists met in Washington, D.C., to discuss these concerns and others, seeking to create a set of standards that would guide future CRISPR-Cas9 research. The gathering ended with a call for public dialogue, encouraging scientists to seek insights from people with disabilities, research funders and faith leaders as they consider the future of gene editing.

That request was repeated earlier this year, when scientists and ethicists from the National Academy of Sciences and National Academy of Medicine released a report on the challenges presented by human genome editing.

"Public discussion is important for exploring social impacts, both real and feared," they said.

Faith and science

Religious teachings have influenced scientific research for centuries. Generally speaking, researchers have always brought their religious convictions to the lab or hospital, Botkin said.

"A number of the founding members of the bioethics field came to it from a faith background," he said.

However, recent calls for increased dialogue with faith leaders still led to some discomfort, Botkin noted. Today’s scientists aren’t used to talking about their work in explicitly religious terms.

"Oftentimes, those of us in bioethics put the faith element of (our work) aside. We try to look at it from more of a secular perspective," he said.

In terms of gene editing, this means that debates focus on how to balance the promises of the CRISPR-Cas9 technique with its potential risks. Researchers worry about how to define appropriate genetic intervention from a medical standpoint and not a religious one.

On one hand, this secular approach is understandable, the Rev. Nichols said. Faith groups don’t agree on how to approach gene-related research, and some churches are quite hostile to scientific innovation.

We’re used to thinking of people of faith as those who "stand outside of science and throw rocks at it," he said.

Pew Research Center | Aaron Thorup, Deseret News

Recent research has shown that religious Americans are more skeptical about gene editing than other adults, according to a July 2016 study from Pew Research Center.

Nearly two-thirds of U.S. adults with a "high commitment" to religion say that gene editing crosses a line we should not cross, compared with 28 percent of U.S. adults with a "low commitment," Pew reported. Commitment was measured using church attendance frequency, prayer habits and interest in religion.

But expressing skepticism or concern shouldn’t disqualify someone from an important debate, Botkin said. Religious leaders are important stakeholders in the gene editing conversation.

"Faith leaders and communities have the opportunity to sit down with couples struggling with a child with a disability or a pregnancy in which a disability has been recognized," he said.

Religious communities will defend the rights of those living with a genetic disorder, who may not have the resources to pursue specialized treatment, the Rev. Nichols said.

"I think faith communities can celebrate diversity," he said.

Questions about how far to take the CRISPR-Cas9 technique invite moral reflection, and the ultimate answers will affect people in church pews, as Ted Peters, co-editor of "Theology and Science," told the Deseret News last year.

"Gene editing isn’t just a science for the laboratory on the other side of town. It’s going to influence families in the midst of all of our congregations," said Peters, who is a keynote speaker at the Salt Lake City conference.

Important dialogue

The upcoming conference in Salt Lake City seeks to overcome the awkwardness between medical and religious professionals by facilitating conversations, the Rev. Nichols said.

"This is one of the first conferences in the country that’s actually being intentional about bringing theologians to the same table as research scientists, bioethicists and doctors," he said.

Around 90 scientists, clergy members, students and ethicists will come together at the Episcopal Conference Center downtown to get up to speed on recent research. Participants include University of Utah researchers, members of national bioethics groups, local faith leaders and people affected by genetic disorders, such as Steve Hatch, co-owner of Hatch Family Chocolates, who has dwarfism.

The program features speeches by leading geneticists and theologians, as well as group discussions of the right ways to use the CRISPR-Cas9 technique.

"It’s like a knife. A knife in and of itself isn’t something we should throw away. It’s useful, but it can also kill someone and cause tremendous suffering," the Rev. Nichols said. "It’s all in how we use it and when we use it."

The goal isn’t to convince scientists to be more religious or force faith leaders to stop whining about the moral implications of gene editing. Instead, participants will challenge each other to see scientific innovation from a new perspective, Botkin said.

"I think it will bring us all to a higher level of wisdom about what the range of issues are when it comes to gene editing," he said.

Conference organizers hope to eventually publish a summary of the event in an academic journal, highlighting what’s possible when faith leaders and scientists focus on their shared interest in helping people flourish, the Rev. Nichols said.

"What we’re trying to to do is create a time and a space for people who are devoting their lives to research … to sit down and have a very meaningful conversation about the ethical issues in human germline editing so that they have something to contribute to the conversation going forward," he said.